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Employment and Support Allowance (ESA) for people with epilepsy

This information applies to England, Scotland and Wales.
For information on claiming Employment and Support Allowance in Northern Ireland, go to the NI Direct website.

What is Employment and Support Allowance (ESA)?

ESA is a benefit for people who have an illness or disability that makes it difficult or impossible for them to work. There are two types of ESA.

Contribution-based ESA: You’ll get this if you’ve made enough National Insurance Contributions.

Income-related ESA: You may get this on its own, or on top of contribution-based ESA, if you are on a low income.

Universal Credit

Income-related ESA will eventually be replaced by a new benefit called Universal Credit. Universal Credit is being introduced in stages. When it affects you will depend on your personal situation, where you live and what benefits you currently claim. As of September 2016 it’s still in Stage 1.

What will I get?

You’ll normally get the assessment rate for 13 weeks after your claim. This is currently:

  • Up to £57.90 a week if you’re aged under 25
  • Up to £73.10 a week if you’re aged 25 or over

After that, if you’re entitled to ESA, you’ll be placed in one of two groups and will get:

  • Up to £102.15 a week if you’re in the work-related activity group
  • Up to £109.30 a week if you’re in the support group

These figures were correct in November 2016.

Can I claim ESA?

You may be able to get ESA if your epilepsy (or another illness or health condition) affects your ability to work.

How do I claim ESA?

The quickest way to claim is to call the ESA contact centre on 0800 055 6688. Alternatively you can fill in the ESA claim form (form ESA1) and send it back or take it to your local Jobcentre Plus office. You will need to provide a medical certificate (also known as a fit note) from your doctor saying that you are not fit for work. 

What happens once I’ve made a claim?

ESA Process chart

There are several stages to the ESA claim process. See our diagram of the claim process, or read on to find out more about each stage.

The assessment phase

Once you have made a claim for ESA, you will be paid the assessment rate while your claim is assessed. This usually lasts 13 weeks but can last longer if there are delays. You will need to keep providing medical certificates from your doctor during the assessment phase.

Capability for work questionnaire

During the assessment phase, you will usually be sent a capability for work questionnaire (form ESA50) which asks more detailed questions about your health and ability. If you are sent one, you need to fill it in and return it within 4 weeks. You can find a guide to filling in the ESA50 form on the Citizens Advice website.

Face-to-face assessment

Most people who apply for ESA will need to have a face-to-face assessment with a healthcare professional. This is called a work capability assessment. The assessments are carried out by the Health Assessment Advisory Service, usually at one of their centres. If you have to travel to the assessment, you can claim travel expenses. If your disability makes it difficult or impossible to travel to the assessment, you can ask for the assessor to come to your home instead.

You can find the answers to frequently asked questions about the ESA assessment on the Health Assessment Advisory Service website.

The face-to-face assessment has two parts:

  • The limited capability for work assessment
  • The limited capability for work-related activity assessment

Part 1 - limited capability for work assessment

The aim of this part of the assessment is to decide if you are eligible to claim ESA. The healthcare professional will ask you questions and score you based on your physical and mental abilities. If you score enough points you will be awarded ESA. If you don’t score enough points you’ll need to claim Jobseeker’s Allowance instead.

Part 2 - limited capability for work-related activity assessment

The aim of this part of the assessment is to decide which of 2 groups you will be put into:

  • The support group – you get a higher rate of ESA and are not expected to look for work
  • The work-related activity group – you get a lower rate of ESA and are expected to start doing things to help you return to work, including attending work-focused interviews

How will I be assessed in the ESA assessment?

During both parts of the assessment you will be asked about your physical and mental abilities. These are divided into ‘activities’ and ‘descriptors’. During the assessment the healthcare professional will be looking at which descriptors best describe your situation.

Limited capability for work assessment

In the first part of the assessment, you score points depending on which descriptors apply to you. You need to score 15 points or more to qualify for ESA.

See the box below for some examples of how the descriptors might apply to someone with epilepsy. You can read a full list of the descriptors in Appendix 1 of the Disability Rights UK factsheet The work capability assessment

Descriptors for the limited capability for work assessment

Part 1: physical abilities
A number of these descriptors would not be possible for someone having a seizure. So it is worth thinking carefully how they might apply to you.
Activity 9 and 10 may apply to someone with epilepsy.

Activity No 9
Absence or loss of control whilst conscious leading to extensive evacuation of the bowel and/or bladder, other than enuresis (bed-wetting), despite the wearing or use of any aids or adaptations which are normally or could reasonably be worn or used.

9 a (i)At least once a month experiences:
loss of control leading to extensive evacuation of the bowel and/or voiding of the bladder; 15 points

Because this activity talks about loss of bladder or bowel control while conscious, it would be difficult to argue in relation to a tonic-clonic seizure.

Activity No 10 Consciousness during waking moments

10 (a)At least once a week, the person has an involuntary episode of lost or altered consciousness resulting in significantly disrupted awareness or concentration 15 points

10 (b)At least once a month, has an involuntary episode of lost or altered consciousness resulting in significantly disrupted awareness or concentration 6 points

If you have seizures where you lose consciousness or your consciousness is altered, descriptor 10(a) or 10(b) may apply to you.

If you score 15 points from any of the activities listed in part one, you should qualify for ESA. You can only score once for each activity.

Part 2: mental abilities
A number of these activities could be difficult or impossible if you were having a seizure. They may also be difficult because of memory problems or side-effects of your medicine. If you are feeling depressed this may also influence how possible it would be to do the activities.

If you score 15 points altogether for activities listed in parts one and two, you should qualify for ESA.

If you don’t score enough points to qualify for ESA, you will need to claim Jobseeker’s Allowance instead, unless you meet one of the exceptional circumstances below.

Exceptional circumstances

Even if the decision maker thinks you haven’t passed the limited capability for work assessment, there is one other way you may pass it. This is if you have information from a healthcare professional which says that one of two exceptional circumstances apply to you.

The first exceptional circumstance is about having a life-threatening illness.

If you have been told you are at particular risk of Sudden Unexpected Death in Epilepsy (SUDEP), this may apply to you.

Epilepsy Action has more information on SUDEP

The second exceptional circumstance is written below.

You suffer from some specific disease or bodily or mental disablement and consequently there would be a substantial risk to the mental or physical health of any person if you were found not to have a limited capability for work-related activity. This risk should be linked to work you could realistically do according to your education and skills. This circumstance will not apply to you if the risk could be significantly reduced by making reasonable adjustments to your workplace or by you taking medication as prescribed

If your specialist feels either of these exceptional circumstances applies to you, they will need to write a letter saying this. Make a copy of this letter then, ideally, send it with your application form. If you have already sent your form off, send it in anyway, and take a copy with you to your assessment.

Limited capability for work–related activity assessment

In the second part of the assessment you will be asked more questions about your physical and mental abilities. You can read a full list of the descriptors in Appendix 3 of the Disability Rights UK factsheet The work capability assessment

If any one of the descriptors applies to you, you are automatically placed in the support group. If none of the descriptors apply to you, you will be placed in the work-related activity group.

How should I approach the ESA assessment?

A lot of people understandably get anxious about the ESA assessment. Here are some tips to help you feel as prepared as possible.

Make notes beforehand

Making notes beforehand of the things you think will be most important to say can really help once you are in the assessment. Here is a list of the sorts of things that a person with epilepsy may need to mention. You can use this list to make notes about your situation.

  • If there is a particular cause for your epilepsy – for example a brain tumour
  • What happens to you during a seizure
  • How often you have seizure
  • How often you lose control of your bladder or bowel
  • What your seizure recovery is like – for example whether you need to go to sleep, or if your awareness is affected
  • How long it takes you to recover from a seizure
  • Whether you have had to go to hospital because of a seizure
  • Whether you have recently been injured during a seizure – for example cut your head
  • Whether rescue medicine has been given to you by a carer or health professional after a seizure
  • Any support you are given by a partner or carer
  • What the side-effects of your medicines are for you
  • Whether your memory and/or concentration are affected
  • If you have worked in the past, how your epilepsy affected your ability to do the job, and how working affected your epilepsy
  • Any other impact your epilepsy may have on your life
  • Any relevant information about other health conditions

Take someone with you

As with any important meeting, it can really help to take someone with you. Ideally this will be someone who can help you feel as relaxed as possible. And someone who could remind you to look at your notes if there are things you don’t remember. They could also take notes during the meeting as a record of what was said.

Ask for a recording

You can ask for the ESA assessment to be recorded, by calling the Health Assessment Advisory Service on 0800 288 877. You don’t have a legal right to a recording, but they should consider your request. You should make the request as far in advance as possible.

For more information on recording see the Health Assessment Advisory Service website.

What can I do if I’m not happy with the decision?

Once the ESA assessment is complete, the assessor will send a report to the Department for Work and Pensions (DWP). The DWP makes the final decision about whether you are entitled to ESA, and if so which group you will be put in. They will send you a letter letting you know the decision.

If you’re not happy with the decision, you can ask the DWP to look at your case again. This is called a mandatory reconsideration. You have one calendar month from the date of your decision letter to request this.

If the DWP has looked at your case again, and you are still unhappy with the decision, you can appeal. For more information on appeals and reconsiderations see the appeals and reconsiderations factsheet on the Disability Rights UK website.

Where can I get help with benefits?

C-App
Free online tool to help you prepare for your ESA assessment. The tool allows you to practice answering the sort of questions you’ll be asked in the assessment.
Website: c-app.org.uk/

Turn2us
Provides a free online benefits calculator and grants search tool to help you find out what financial help you are entitled to.
Website: turn2us.org.uk
Helpline: 0808 8002 2000

Citizens Advice
Citizens Advice provides advice to everyone on their rights and responsibilities. Check the website or your local phonebook for details of your nearest Citizens Advice service.
Telephone advice in England: 0344 111 444
Telephone advice in Wales: 0344 77 20 20
Find your local Citizens Advice Bureau in Scotland
Find your local Citizens Advice Bureau in Northern Ireland
Website: citizensadvice.org.uk

DIAL UK
Disability Information and Advice Line services, run by and for disabled people. They may be able to refer you to someone who can help you fill out claim forms for benefits (provided there is someone in your area).
Helpline: 0808 800 3333 (to find your local group)
Website: scope.org.uk/dial

GOV.UK
This website has lots of information about all the different benefits that are available.
Website: gov.uk/browse/benefits

Disability Rights UK
This website has a number of free factsheets you can download. It offers basic information about benefits, tax credits, social care and other disability-related issues for claimants and advisers.
Website: disabilityrightsuk.org

Welfare Rights Unit
Welfare Rights Units give free advice and support on benefits. Some can also help with completing claim forms and appealing benefits decisions. Contact your local council to find out if they have a Welfare Rights Unit. To find your local council visit gov.uk/find-your-local-council

NI DIRECT.GOV.UK
This website has lots of information about the benefits that are available in Northern Ireland.
Website: nidirect.gov.uk

Advice NI
Offers information, advice, advocacy and representation for people in Northern Ireland.
Helpline: 0800 988 2377
Website: adviceni.net

If you would like to see this information with references, visit the Advice and Information references section of our website. If you are unable to access the internet, please contact our Epilepsy Action Helpline freephone on 0808 800 5050.

Code: 
F142.03
Event Date: 
Tuesday 10 June 2014 - 16:13

This information has been produced under the terms of The Information Standard.

  • Updated November 2016
    To be reviewed November 2017

Comments: read the 12 comments or add yours

Comments

I did all of these and scored 15 yet i have complex partial /and simple partial / absences yet they have put me in the working group from the other on ESA and i was born with severe epilepsy and after having seizures without a warning which can be daily i do not see myself been in a stable job for long and is the reason iam fighting my case ...

Submitted by Lucy Earnshaw on

Hi Lucy

Thanks for your message. I can understand it must be upsetting to be put into the work-related group when you feel you should be in the support group for ESA.
If you want to challenge the decision, it’s a good idea to get specialist benefits advice.
The list of organisations on this page under ‘Where can I get help with benefits?’ should help (towards the bottom of that page):
https://www.epilepsy.org.uk/info/benefits/employment-support-allowance-ESA

Best of luck.

 Grace

Epilepsy Action Helpline Team

Submitted by todd at Epileps... on

Really helpful info. Tried working for a long time but it's obvious to partner and me that working increases number of seizures so am looking at other options to keep seizures to a minimum. Thanks for your info.

Submitted by Alison Hobbs on

Can I claim ESA if I have registered for PIP? I am having seizure quite frequently and had to give up work as it was getting too dangerous for me. I have a sick note from my doctors signing me off for the next 3 months.

Thanks
Jane

Submitted by Jane on

Hello Jane

You can claim ESA even if you have registered for PIP. You may find it helpful to get in touch with an organisation such as Turn2us or Citizens Advice who offer specialist benefits advice. They also have calculators where you can check what you may be entitled to based on your personal situation.  

Karen

Epilepsy Action Helpline Team

Submitted by todd at Epileps... on

I am 50, been out of permanent work for the last 14 years & I am epileptic. I get the feeling employers out there just worry about taking me on, despite past experience & knowledge I have regarding the types of jobs I go for. These job clubs might be a good thing, but if I keep getting turned down for the jobs I apply for I am more likely to have more seizures, which many employers don't understand about.

Submitted by Terry Stevens on

My son who takes prescribed epilepsy tablets & suffers seizures also has type 1 diabetes & severe anxiety & stress (With all the GP & hospital records supplied). He only started receiving ESA end of 2016 but has to go for assessment in 3 weeks. Reading the comments here I am worried that he will wrongly be deemed fit for work. If this happens and he goes to appointments at Jobseekers could he insist on any potential employer giving guarantee that they are medically able to differentiate between an epileptic fit and a diabetic fit and how to treat either.I am also his appointee & know his anxiety would increase if he thought not.He also isn't allowed to drive because of these seizures so the same concern would apply to these fits occuring on public transport. I would be grateful for a response.

Submitted by Susie on

Hi Susie
 
It’s a worrying time with the welfare benefit changes. The difficulties you have mentioned should definitely be discussed at your son’s appointment at jobseekers. The above information on ESA and epilepsy could also help with your preparations before the assessment.
 
It’s understandable you and your son are anxious about the outcome of this assessment. If it is decided your son is fit to look for work, potential employers should put things in place to make sure he is safe in the workplace. This would include adequate and appropriate equipment, facilities and personnel to enable first aid to be given to him if he becomes ill at work.
 
If your son was offered a job, it would be a good idea to prepare a care plan with his employer. This care plan should explain the difference between the different types of seizures he has. Also it should include what happens when he has a seizure and how people can help him during and afterwards.
 
We have information such as poster, pocket cards and visual first aid information for epilepsy should an employer need such information.
 
You may wish to also contact Diabetes UK for any information they may have to help possible future employers.
 
You could also talk to the Jobseekers about the Access to Work grant. This grant can help pay for practical support to help someone in work. It can be used for things like:
•Changes to the equipment used
•Special equipment
•Help with travel costs if someone can’t use public transport
•A support worker to help in the workplace
•Disability awareness training for colleagues.
 
I hope the assessment goes well.  If we can be of any more help, please feel free to contact us again. You can contact our helpline team directly, either by email helpline@epilepsy.org.uk  or the Epilepsy Action Helpline freephone 0808 800 5050. Our helpline is open Monday to Friday, 8.30am until 5.30pm.
 
Regards
 
Diane
Epilepsy Action Helpline Team
 

Submitted by Diane, Epilepsy... on

Hi I am epileptic and so is my partner I have previously worked bit am currently been placed in ESA wrg after a yr long back injury still ongoing and lost my job but my partner has been told by his mental health team that he has diagnosis of emotionally unstable personality disorder with anti social traits and neurology have confirmed he has Epileptic and nead seizures where he has had 17 in 15 days of mixed siezures, yet I have appealed my partners ESA as he had a cpn who fone the forms and was unaware of being in the work group at the time he doesn't understand all this and never got any warning it was going to end after the yr until it stopped but numerous calls and letters explaining circumstances and all we get back is that he will be in receipt of ni contributions but no money to live on I font know where to turn I also asked them as a couple should we be on a joint claim but still no change they don't seem to care any advice would be great thanks Nicola

Submitted by Nicola Lillicrap on

Hi Nicola 

Thank you for your comment. 

We completely understand your frustration and we are hearing from others that are also finding applying for benefits challenging. 

As the rules can be quite complicated. If you haven’t already, it would be beneficial to get support with this from a specialist welfare benefits advisor, as their knowledge and experience can be invaluable. Organisations such as Citizens Advice , DIAL UK or a local welfare rights unit can provide this. 

The charity Turn2us provides a free online benefits calculator that could help you find out what financial help you and your partner are entitled to. Or you can phone them free on 0808 802 2000. 

We can’t say if someone will get these benefits but please feel free to use our information on ESA and PIP for people with epilepsy, when you contact a benefits advisor. 

We also have an information page on NEAD that has details of non-epileptic attack disorder.org.uk

If we can be of any more help, please feel free to contact us again, either by email or the Epilepsy Action Helpline freephone 0808 800 5050. Our helpline is open Monday to Friday, 8.30am until 5.30pm. 

Regards 

Diane

Epilepsy Action Helpline Team

Submitted by rich on

i dont see why i have to keep having assesments for this ESA ,, my grand mal Epilepsy has not changed since i had my income surport stoped becouse my girlfriend moved in and in 2015 we got married '' ive now had a heart attack and also have 2 steanths in my chest now tooplus a thyroid problem yet the ESA will be stoping my ESA in 1/11/2017 and it seems i have to go through a assesment once more to get help otherwise im having to live off my PIP i get payed monthly how do i pay bills having to wait every month to get anything my ESA was paid every 2weeks which help pay my electric gas and water bills . our goverment is RACIST TOWARDS US DISABLED PEOPLE DONT THEY THINK IF I COULD WORK I WOULD HAVE OVER THE 30 plus years im 53 show me a company that will employ some one who could have a epileptic fit ive burn marks all over my body were i spent 11months in hospital having skin graphs i died 2 my life is not getting better now i have heart problems too now so why am i been treated like this , disabled people are treated like scum from the DWP if there is to be a saving take it from the disabled first .yet all our politicains are the currupt along with the people been given benefits yet none of speak ENGLISH TO GET IT we all know there is curruption in DWP yet know one does anything while we suffer ?

Submitted by mr Thomas moore on

Hi Thomas

You’re clearly feeling very angry about the situation. And you’re not alone. We speak to people every day who are angry about the way they are treated by DWP.

Epilepsy Action is a member of the Disability Benefits Consortium. They are campaigning to get disabled people treated better, particularly within the benefits system. You may want to have a look at what they’re doing and see if there’s anything you’d like to join in with. 

I hope you’ve found something on our ESA pages that is useful. Though it won’t make any difference to you having to have regular assessments. I’m afraid that’s the same for everyone. 

You could contact Turn2us about your money problems. They could check to see if there is any other help you could get. Their phone number is 0808 802 2000.

Regards

Cherry  

Epilepsy Action Helpline Team

Submitted by rich on